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Turning the tide for rare disease

Turning the tide for rare disease

Barriers to care in sickle cell disease: the reflections of La’Shardae Scott, social worker and RARE mother

By CONTRIBUTOR
18 January 2023

RARE News

Cell & Gene Therapy Summit 2023

By admin
18 January 2023

RARE News

PTC Therapeutics launches 9th annual STRIVE™ Awards Program to fund initiatives- benefitting the Duchenne muscular dystrophy community

By admin
18 January 2023

Patient voice

Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years

By CONTRIBUTOR
11 January 2023

RARE News

“Play the Rare Game for the Rare Ones” kicks off in Parma with the first Rugby match to raise awareness on rare diseases

By admin
6 January 2023

Turning the tide for rare disease

Rare × 2 = ? What having twins with a rare condition teaches you about people

By CONTRIBUTOR
4 January 2023

RARE News

The Waiting Room Entertainment’s efforts to bridge the communication gap between patients, organizations and the medical community

By admin
3 January 2023

Turning the tide for rare disease

The Christmas ring

By CONTRIBUTOR
19 December 2022

Turning the tide for rare disease

Rare Diseases Lesotho Association: revolutionising rare disease care and raising awareness in Lesotho

By CONTRIBUTOR
15 December 2022

Turning the tide for rare disease

Rare Land: a Greek film shining a light on alpha mannosidosis and rare disease

By CONTRIBUTOR
12 December 2022

RARE News

CureDuchenne raises more than $1.5 million at eighth annual Napa in Newport to help find a cure for Duchenne muscular dystrophy

By admin
8 December 2022

RARE News

NFL players spotlight Sickle Cell Disease Association of America

By admin
7 December 2022

Charity & advocacy

#DuchenneCan: celebrating what people with Duchenne CAN achieve

By CONTRIBUTOR
5 December 2022

Turning the tide for rare disease

Matt Hay: becoming a neurofibromatosis advocate and giving back to his community

By CONTRIBUTOR
1 December 2022

Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

By CONTRIBUTOR
24 November 2022

Turning the tide for rare disease

A celebration of 25 years in advocacy: Tanya Collin-Histed, CEO of the International Gaucher Alliance

By CONTRIBUTOR
18 November 2022

Medical

CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy

By CONTRIBUTOR
17 November 2022
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